Hello everyone.
I feel like I am about to join a select group of open minded people willing to help each other by sharing their own experiences, treatments, and ideas. My sincere thanks to all of you for already giving me a "patient's insight" into this new experience. Also, thanks to the MyelomaBeacon.com for making such discussion possible.
I have been reading a lot of discussion on kappa (light chain myeloma), ever since mine was reported to be 853 mg/dL in late November, 2014. Lambda chains:6.69. K/L free ratio= 127.5.
Since then, I have had my bone marrow biopsy and x-rays. I have small lesions on the arm and leg bones and almost imperceptible small lesions on the skull. The biopsy shows 35% plasma cells and the 24-hour urine had 2,650 mg/dL protein, 85.2% IgG! The serum tests for the proteins are in or below the normal range. There is some confusion about the "M spike" and I will be repeating the 24-hour urine test in a couple of days.
I am starting the Revlimid, Velcade and dex therapy this week and the standard 3 X 3-week cycles are scheduled with one "off" week in between cycles.
My blood tests are all normal but this investigation started when my routine tests showed 50 mg/dL protein, and a 234.4 mg/dL protein over 117 mg/dL creatinine. I am mainly worried about the protein (and IgG) leak causing kidney damage. The ultrasound of the heart and kidneys have ruled out any amyloidosis, for now.
I am an (over?) active and fit 67-year old, take long and brisk walks and I play a few rounds of golf every week, walking and carrying my golf bag. In my zig zag pattern, I walk at least 5 miles and at a very brisk pace during the golf rounds. I always do my rigorous stretches, push ups and squats in the morning and evening. I watch my diet, never smoked and keep the alcohol intake between 1 or 2 drinks per day. This whole myeloma business seems surreal to me (and even to my PCP), since I feel as healthy and vigorous as ever and I have absolutely no physical symptoms, except what the x-rays and biopsy show. I hope many of us can live for 'decades' with the current treatments and with the help of a lot of new drugs in the 'pipeline' and undergoing clinical trials ... as stated in the UCSF (Helen Diller) website.
I am quite eager to get this treatment done and over with. The oncologist had cleared me to play golf and to continue my exercise routine based on the small size of the bone lesions. I am not sure I can manage that while undergoing the chemo, since I have to avoid exposure to any infections. I have read about 20+ year survivors and know of a 18+ year survivor of multiple myeloma, the latter without any transplant. I plan to avoid the transplants, though I have a couple of oncologists / researchers from prestigious universities urging me to undergo that therapy; soon after the first 3-month chemo. Any comments? I did read a few comments about this treatment on some forums already. I am going to study the latest discussion on this topic from the last weekend's ASH conference in San Francisco, too.
This episode has certainly brought our small family (my wife, our son and I) very close. Our two grandsons make us forget everything about my myeloma when they are around. However, I have to stay away from them to avoid any infections they may transmit to me. I am certainly not afraid of death (just had a 'near death' experience in an auto accident). However, I cannot stand needles and the sight of blood.
I think the only times I lost sleep during these past few weeks were: first, when I was worried that my kidneys were failing and that I may end up on dialysis, second, when the kappa came in high and I did not know what it meant (till I started reading about it and this website helped me immensely); and, third, when I had to get the bone marrow biopsy!). Oh well! I will just have to get over this 'needle pain' since I'll have to undergo another biopsy at the end of this 3-month chemo.
We are already canceling our routine 'one day every week' with our younger grandson and most probably cancel going to any Christmas or New Year's parties (to avoid crowds and the infections people may be carrying). All indications are that it shouldn't be too bad; a little nausea and feeling tired.
I would appreciate any and all the feedback on what to expect during the next three months.
Forums
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
G'day K,
I just wanted to say I know the whole "I hate needles" too well. If you have not already got one, perhaps you should consider getting a portacath put in. It just makes IV so much easier. No missing veins. Also minimal pain once it settles down after insertion.
My biggest thing before diagnosis was getting infections. Mostly from my children. Well, picking them up from daycare usually. So I understand your fear of being around your grandchildren. However, since my treatments started, I have never really got those pesky bugs. I think this is because now that I am aware of my low immunity, if I see people who are sick, I definitely keep my distance. I have also received monthly infusions of Intragam (human immunoglobulin), which boosts my immunity. So perhaps if your immunity is low you could ask about this if you are not already receiving it.
I urge you not to avoid your grandkids entirely due to your fear. If they know you are coming over and they are well, then just ask them to shower and have clean clothes on so they aren't carrying potential germs from other kids etc.
Also, your doctor can give you an indication where your immunity is at from your blood tests for your own piece of mind.
As to what you can expect from the chemo, etc, everyone is different. My main side effects were due to the dex sleeplessness and always being hungry and emotionally sensitive (angry, sad, low tolerance) on dex days. Then on chemo days lethargic and a little nauseous. All in all not too bad.
Yours Vic
I just wanted to say I know the whole "I hate needles" too well. If you have not already got one, perhaps you should consider getting a portacath put in. It just makes IV so much easier. No missing veins. Also minimal pain once it settles down after insertion.
My biggest thing before diagnosis was getting infections. Mostly from my children. Well, picking them up from daycare usually. So I understand your fear of being around your grandchildren. However, since my treatments started, I have never really got those pesky bugs. I think this is because now that I am aware of my low immunity, if I see people who are sick, I definitely keep my distance. I have also received monthly infusions of Intragam (human immunoglobulin), which boosts my immunity. So perhaps if your immunity is low you could ask about this if you are not already receiving it.
I urge you not to avoid your grandkids entirely due to your fear. If they know you are coming over and they are well, then just ask them to shower and have clean clothes on so they aren't carrying potential germs from other kids etc.
Also, your doctor can give you an indication where your immunity is at from your blood tests for your own piece of mind.
As to what you can expect from the chemo, etc, everyone is different. My main side effects were due to the dex sleeplessness and always being hungry and emotionally sensitive (angry, sad, low tolerance) on dex days. Then on chemo days lethargic and a little nauseous. All in all not too bad.
Yours Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: K_Shash's RVD induction therapy experience
Thanks, Vic.
I hope I can tolerate the chemo as well as you did. Thanks for all the input. Our home is just about completely disinfected and we have the hand cleaners everywhere (my wife is in the medical field). I have to avoid my grandsons till the older one gets over his cough and fever (contracted from his preSchool, I am sure). Though I have not been affected, his grandmother already had a 1-day fever and flu.
I am sorry to hear that you were afflicted with myeloma at such an early age. I wish you a "complete remission".
I hope I can tolerate the chemo as well as you did. Thanks for all the input. Our home is just about completely disinfected and we have the hand cleaners everywhere (my wife is in the medical field). I have to avoid my grandsons till the older one gets over his cough and fever (contracted from his preSchool, I am sure). Though I have not been affected, his grandmother already had a 1-day fever and flu.
I am sorry to hear that you were afflicted with myeloma at such an early age. I wish you a "complete remission".
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
K_Shash-
Yes, you are more open to getting infections if your white cell count is low, but it isn't necessary to change your entire life. Be aware when people around you may have some type of respiratory infection and steer clear of them. If your grandkids are sick, don't see them, but otherwise enjoy them. Play golf. The activity is good for you.
I worked in a healthcare system where my desk was in a pod of 6. Mine was in the middle of a double row. When I was diagnosed, I told my pod mates to cough away from my desk when they were sick. I was the only one in the pod who didn't get a cold or flu that year. I've had a few respiratory infections in the 7 years since diagnosis, but I always got at least one a year before diagnosis. In the last 3 years I haven't had any. I do not limit what I do, where I go, and who I am around unless the person is obviously sick.
If you are feeling good, don't let the fear of consequences from myeloma rule your world. Just be more conscious of certain situations. Enjoy the life that you have.
Nancy in Phila
Yes, you are more open to getting infections if your white cell count is low, but it isn't necessary to change your entire life. Be aware when people around you may have some type of respiratory infection and steer clear of them. If your grandkids are sick, don't see them, but otherwise enjoy them. Play golf. The activity is good for you.
I worked in a healthcare system where my desk was in a pod of 6. Mine was in the middle of a double row. When I was diagnosed, I told my pod mates to cough away from my desk when they were sick. I was the only one in the pod who didn't get a cold or flu that year. I've had a few respiratory infections in the 7 years since diagnosis, but I always got at least one a year before diagnosis. In the last 3 years I haven't had any. I do not limit what I do, where I go, and who I am around unless the person is obviously sick.
If you are feeling good, don't let the fear of consequences from myeloma rule your world. Just be more conscious of certain situations. Enjoy the life that you have.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: K_Shash's RVD induction therapy experience
I am also preparing to start treatment, probably on January 5th, waiting for the local oncologist to confirm.
I am anxious about side effects, and mostly from reading here about the dexamethasone side effects.
I would love to hear from folks about their experience!
I'll be following, thanks.
I am anxious about side effects, and mostly from reading here about the dexamethasone side effects.
I would love to hear from folks about their experience!
I'll be following, thanks.
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heatherlib - Name: heather
- Who do you know with myeloma?: self
- When were you/they diagnosed?: may 2014
- Age at diagnosis: 52
Re: K_Shash's RVD induction therapy experience
I was diagnosed in August 2014 and started Revlimid/ Velcade/ dex, which I continue.
Side effects
Fatigue - I nap frequently and I try not to plan too much. This is not the time to be planning big projects or travels. At times the fatigue has been horrible - sleeping 16 hours a day and not doing much when I was awake. At other times, it has been almost gone - sleeping 8 or 9 hours, and doing housework, not napping, exercising.
Insomnia - very predictable from the dexamethasone. On dex nights and maybe the next night, I have learned to take Benadryl (diphenhydramine) to help me sleep. Seems to work pretty well.
Skin rashes and irritation - Velcade gives me almost a like a burn at the site of injection which heals after about a week or so. 25 mg of Revlimid also gave me an all-over body rash, which is treated by taking Zyrtec (cetirizine) or Allegra (fexofenadine) and lowering the dose to 15 mg.
More frequent colds / immunosuppression - I almost never got colds before. Now I'm on my second one this season, and it's not even Christmas yet. The colds seems worse that typically too, with more severe symptoms.
GI - wild swings between diarrhea and constipation. And I mean wild. This is has been the worst side effect and the one to which I've had to give the most attention and energy.
I went through a very difficult process deciding to have an allogeneic transplant, and now I can't find a donor. I am discouraged, but we'll keep looking.
Side effects
Fatigue - I nap frequently and I try not to plan too much. This is not the time to be planning big projects or travels. At times the fatigue has been horrible - sleeping 16 hours a day and not doing much when I was awake. At other times, it has been almost gone - sleeping 8 or 9 hours, and doing housework, not napping, exercising.
Insomnia - very predictable from the dexamethasone. On dex nights and maybe the next night, I have learned to take Benadryl (diphenhydramine) to help me sleep. Seems to work pretty well.
Skin rashes and irritation - Velcade gives me almost a like a burn at the site of injection which heals after about a week or so. 25 mg of Revlimid also gave me an all-over body rash, which is treated by taking Zyrtec (cetirizine) or Allegra (fexofenadine) and lowering the dose to 15 mg.
More frequent colds / immunosuppression - I almost never got colds before. Now I'm on my second one this season, and it's not even Christmas yet. The colds seems worse that typically too, with more severe symptoms.
GI - wild swings between diarrhea and constipation. And I mean wild. This is has been the worst side effect and the one to which I've had to give the most attention and energy.
I went through a very difficult process deciding to have an allogeneic transplant, and now I can't find a donor. I am discouraged, but we'll keep looking.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: K_Shash's RVD induction therapy experience
Thanks Tracy J for sharing your experience with these medications. And I hope heatherlib sees them.
A small dose of Benadryl helps me sleep, too. Thanks again, Tracy J for letting all of us know some of the simple remedies. I think yours and other patients' personal experiences seem to be far more helpful than all the published literature I have been given.
And yes, NSTEWART (Nancy in Phila), I am waiting anxiously for my grandsons to get over their coughs and colds. And also waiting to get a few dry days before I can get on the golf course here in Northern California. MY WBC and RBC tests came in today, both in the normal range, but the WBC on the 'low' side. I hope the last three years' flu shots and other vaccines help me through this flu season.
Funny things about individual response to these drugs: I cannot tolerate Mevacor (lovastatin) but have had no problem with Lipitor (atorvastatin) for 20 years. My wife has had exactly the opposite reaction. A small dose of Benadryl gives me 5 hours of sound sleep and another friend of mine had no effect in spite of taking a double dose!!!
I start my treatment tomorrow. First the dex with breakfast, then Velcade around 2 p.m. and the Revlimid with dinner, but a few hours before bed time. (Don't know what size Velcade dose I'd get, but my Revlimid is 15mg and dex 20 mg.). And a few more pills like aspirin, antiviral (for shingles and herpes, etc.), and some medications for nausea, as needed
As it worked out, I get my 2nd and 3rd shots of Velcade on Christmas Eve and on New Year's Eve!! I hope I feel well enough to relate all my side effects on a weekly basis. IF I am not too nauseated or sore, and IF the grandsons are healthy, I sure am looking forward to a great time.
Of course, I will be writing next week again to let you know how I am coping with these drugs, and to wish all of you very Happy Holidays. I was beginning to get a little overwhelmed this afternoon about this upcoming battle and I tinkered with a few gadgets and did some chores. But nothing helped like reading your comments!! Thanks.
K_Shash
A small dose of Benadryl helps me sleep, too. Thanks again, Tracy J for letting all of us know some of the simple remedies. I think yours and other patients' personal experiences seem to be far more helpful than all the published literature I have been given.
And yes, NSTEWART (Nancy in Phila), I am waiting anxiously for my grandsons to get over their coughs and colds. And also waiting to get a few dry days before I can get on the golf course here in Northern California. MY WBC and RBC tests came in today, both in the normal range, but the WBC on the 'low' side. I hope the last three years' flu shots and other vaccines help me through this flu season.
Funny things about individual response to these drugs: I cannot tolerate Mevacor (lovastatin) but have had no problem with Lipitor (atorvastatin) for 20 years. My wife has had exactly the opposite reaction. A small dose of Benadryl gives me 5 hours of sound sleep and another friend of mine had no effect in spite of taking a double dose!!!
I start my treatment tomorrow. First the dex with breakfast, then Velcade around 2 p.m. and the Revlimid with dinner, but a few hours before bed time. (Don't know what size Velcade dose I'd get, but my Revlimid is 15mg and dex 20 mg.). And a few more pills like aspirin, antiviral (for shingles and herpes, etc.), and some medications for nausea, as needed
As it worked out, I get my 2nd and 3rd shots of Velcade on Christmas Eve and on New Year's Eve!! I hope I feel well enough to relate all my side effects on a weekly basis. IF I am not too nauseated or sore, and IF the grandsons are healthy, I sure am looking forward to a great time.
Of course, I will be writing next week again to let you know how I am coping with these drugs, and to wish all of you very Happy Holidays. I was beginning to get a little overwhelmed this afternoon about this upcoming battle and I tinkered with a few gadgets and did some chores. But nothing helped like reading your comments!! Thanks.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
Hello again,
Happy Holidays and Season's Greetings!
I started my chemo on Wednesday, December 17. I did have the problem falling asleep on the first night and took Benadryl (thanks, Tracy J).
Then, at around 6:00 p.m yesterday, I discovered due to a burning sensation a 2.5 inch x 1.5 inch (6.35 cm x 3.8 cm) patch of deep pink rash around the Velcade shot site. Again, thanks again to Tracy J's post (the printed matter is confusing: Contact doctor, if severe - emergency or not?) and some other comments I picked up from Dr. Santiago, I feel confident that this is just a minor side effect and slept well last night in spite of the rash patch. This area of the skin burns only when the clothing rubs against it. I'm waiting to hear from my chemo team to find out if I need to do anything else.
No other symptoms so far. No nausea or loss of appetite, no lack of energy, no GI problems – yet.
My oncologist cleared me to get some routine dental checkup and cleaning out of the way yesterday; presumably before the chemo affects my CBC or WBC.
I am bracing myself for the 'cumulative' effects of Revlimid and the weekly Velcade shots.
Can I ask you a favor, Tracy J? How is your chemo succeeding? I hope all of this is 'worth it'. As stated before, I want this to work and avoid any stem cell transplant. My current doses are 20 mg dex and 15 mg Revlimid, apparently a lot smaller than some have reported. This could be because I weigh just around 125 lbs.
Personal note: Both grandsons and my son, too, are still down with a lingering flu-like fever and cough! Hope they are well enough for us to have a good Christmas family get-together!
K_Shash
Happy Holidays and Season's Greetings!
I started my chemo on Wednesday, December 17. I did have the problem falling asleep on the first night and took Benadryl (thanks, Tracy J).
Then, at around 6:00 p.m yesterday, I discovered due to a burning sensation a 2.5 inch x 1.5 inch (6.35 cm x 3.8 cm) patch of deep pink rash around the Velcade shot site. Again, thanks again to Tracy J's post (the printed matter is confusing: Contact doctor, if severe - emergency or not?) and some other comments I picked up from Dr. Santiago, I feel confident that this is just a minor side effect and slept well last night in spite of the rash patch. This area of the skin burns only when the clothing rubs against it. I'm waiting to hear from my chemo team to find out if I need to do anything else.
No other symptoms so far. No nausea or loss of appetite, no lack of energy, no GI problems – yet.
My oncologist cleared me to get some routine dental checkup and cleaning out of the way yesterday; presumably before the chemo affects my CBC or WBC.
I am bracing myself for the 'cumulative' effects of Revlimid and the weekly Velcade shots.
Can I ask you a favor, Tracy J? How is your chemo succeeding? I hope all of this is 'worth it'. As stated before, I want this to work and avoid any stem cell transplant. My current doses are 20 mg dex and 15 mg Revlimid, apparently a lot smaller than some have reported. This could be because I weigh just around 125 lbs.
Personal note: Both grandsons and my son, too, are still down with a lingering flu-like fever and cough! Hope they are well enough for us to have a good Christmas family get-together!
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: K_Shash's RVD induction therapy experience
I've seen a few people on this thread mentioning taking Benadryl to help get some sleep on dex nights. I did that too, and it helped. However, when I told my medical team, they advised against using Benadryl because they said repeated usage has been linked to short term memory loss. They recommended Ambien instead, which, of course, has its own issues. I was reluctant to try Ambien, but eventually I did, and fortunately it worked well for me, with no weird side effects.
So my point here is to coordinate anything you're taking, even a sleep aid, with your medical team.
Best wishes for your upcoming treatments, heatherlib and K_Shash!
Mike
So my point here is to coordinate anything you're taking, even a sleep aid, with your medical team.
Best wishes for your upcoming treatments, heatherlib and K_Shash!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: K_Shash's RVD induction therapy experience
K_Shash,
Your description of the rash around the Velcade injection site sounds pretty normal to me. I had that happen a few times, though not every time, when I got Velcade injections. It was sort of like sunburn.
I'm not a doctor, though, so if you are concerned, don't hesitate to contact your medical team.
Mike
Your description of the rash around the Velcade injection site sounds pretty normal to me. I had that happen a few times, though not every time, when I got Velcade injections. It was sort of like sunburn.
I'm not a doctor, though, so if you are concerned, don't hesitate to contact your medical team.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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